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Why we need this group

User
Posted 16 February 2016 14:19:21(UTC)

I have only been away a few days and get back to chaos and unpleasantness! It seems to me that pickled walnut has joined the wrong forum if what he was hoping for was a little group where he can control what is said. I am sure that PCUK still do training for ambassadors and fundraisers - loads of us do a lot of work but we don't bang on about it, we just do it. And all this stuff about PSA tests for 40 year olds at increased risk - do your homework PW ... in fact, your knowledge and understanding is a bit behind the times which makes me wonder if you are also playing games?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted 16 February 2016 15:06:43(UTC)

Setting aside for a moment early PSA testing which divides not only patients but doctors, there is wider agreement on making men more aware of PCa. This Charity has done that in the past with TV adverts and and if I remember correctly competed with others for funding and advertising on buses. It is good to see many of the TV football presenters and some of the football managers wearing their PC badges. But as has been said on a previous occasion, the best way to engage men is to educate them about health and risks at an early age, preferably before they leave school. It is true that women are far more proactive when it comes to health and seeking out answers. There are many forums for Breast Cancer for example than for Prostate Cancer. Maybe advertising in magazines read by women might lead to them making their men more aware. I would have expected PCUK to have looked into this and other possibilities.

Barry
Thanked 1 time
User
Posted 16 February 2016 15:33:06(UTC)

Agree wholeheartedly but I think we have come on in leaps and bounds recently. I often see PC awareness info on the toilet doors in the Ladies' at motorway services

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 16 February 2016 16:53:18(UTC)
Wondered where you had been Lyn so hanging around the loos in service stations😂. I thought you normally travelled by train.😉
If we are talking about getting the message across to younger men then I whole heartedly agree I am still standing on the fence about PSA testing nationally . I have said several times on here that getting the message out there to women is to my mind the way forward. A few years ago there was a weeks worth of information on the Good morning programme (including a live DRE) but we need more of these adverts because people have short memories.

I saw the fb thread and my first reaction was good on him for telling his story (more awareness can only be a good thing right) and then I got to thinking actually a man stood in his underpants revealing his stoma, would that encourage men to get tested or have the opposite affect and send a lot of men running for the hills.?

Eastenders missed a huge opportunity when they portraid the PCA story line choosing the stereotypical older man (saying that Danny Dyer is probably wiping huge beads of sweat of his brow)😍

Getting the message out there to younger men for me is only a small part of the problem , getting them to act and seek help because of symptoms know that's a whole different ball game. (pardon the pun)
The mere mention of ED and incontinence would make an awful lot of men to choose the head in the sand option.
Trevor has 5 sons who are all know at increased risk of getting PCa there age ranging from 42 to 11, the eldest at 42 has decided not to have early testing even though 3 of Trevor's brothers have also had this disease.
Before Trevor was diagnosed I had vaguely heard of PCa and like so many thought it was an old mans disease (how wrong was I) I would most certainly have nagged him to get tested.

We are far from getting the message across but as Lyn says things are improving , to slowly for Trevor .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 16 February 2016 17:10:36(UTC)

Rome Julie, I bought John tickets for the rugby as a treat. Cost me an arm and a leg so bl***y good job we won!

PW's comments about the importance of testing reminded me of Candyman - such a lovely guy; diagnosed at 43, died age 48. I have attached his profile for new younger members - Enzo did not give him the respite he was so hoping for which links in with another thread last week about Enzo after Abbytabby and vice versa. I think one of the cancer charities needs to do some research on whether the younger you are at diagnosis, the less successful the 'curative' treatments will be. Joe, Ben, Mark ....

http://community.prostatecanceruk.org/default.aspx?g=profile&u=2539 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 16 February 2016 18:04:12(UTC)
ROME, you lucky people hope you relaxed and had a wonderful time. Rugby goes right over my head so I didn't even know it was on (sorry rugby fans)
I remember Candyman lovely guy and yes I have wondered if the younger at dx is it more likely to be a tiger than a pussy cat as you say only more research would give the answer.

Something has just occurred to me (thank you Lyn) mentioning such lovely men, Candyman, Mark, Joe, Ben, all younger than the average at DX but all chose to join and contribute to the forum and thank goodness they did because reading there posts has for me been a privlilege. Truly humbling , (tearing up know) . They have left there mark in written word for hopefully future generations this is what the forum is all about not the bickering.
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON
User
Posted 16 February 2016 18:50:35(UTC)

On the subject of younger men being affected, those under 40, with so many cancer illnesses now about one thing that could be bought to their attention is sperm freezing? This may also affect older men, men who have not started a family or who wish to add to an existing family, or want to insure that if their current relationship heads due south, they have the potential and possibility for children with a new partner in due course.

I think I read some years in the media, more than a suggestion, a clinical case being put, for all men to consider sperm freezing, just in case? Can not recall the age. Is it realistic or scaremongering to consider the possibility that with the increased rate of PCa affecting younger and younger men, the natural lineage of many families may be threatened if sperm is not preserved? Should men from 30 plus consider freezing sperm? I think it would be a good idea.

This is not exclusively a "younger man" issue, although it may affect younger men proportionately more than older men purely in numbers affected? Or it may not.

StevePW - you may wish to add the topic of "sperm freezing" to your list?

Oh, and has anyone told you about willie shortening? Apparently men lose up to an inch after a operation, some more some less. I was only told about that on this forum after I had had my op. Now why did no one tell me this? But, it would not have changed my treatment choice. However, there are some men who do not start out with much who this may affect quite badly, and that may influence their choice? A friend of mine told me of a man she knew that was about 4 inches erect. To lose 25% might be more than he would think acceptable?

As for younger men, if we are talking generational segregation, I would be okay I think, at age 58, to contribute to the anywhere from 45 years to 73 years old age band?

Started this post at 0845 this morning, got distracted during the day, so finishing it now at 1841 UK time.

Good luck with your objective. I do hope that as you continue your campaign you can get more people involved, and exclude fewer?

atb

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 16 February 2016 19:10:03(UTC)

Originally Posted by: Online Community Member

Agree wholeheartedly but I think we have come on in leaps and bounds recently. I often see PC awareness info on the toilet doors in the Ladies' at motorway services

That is equality gone mad!  Should I be demanding my annual smear test now?

Joking aside, if a person wants to bang a drum for testing and raising awareness of PCa, should anyone tell them to stop because it is the wrong drum?  Why not deflect them to the more appropriate drum?  Now the conciliatory diplomat in me says do not post this next bit.  So, like  we do when bringing up children, don't discourage them by telling them to stop being irritating, just suggest an alternative activity that is less irritating and more constructive.  

The CD got beaten up by the minx. 

atb

dave

 

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 16 February 2016 19:17:03(UTC)

Why is it anything to do with equality????? You have misunderstood I think - the poster says something like "does your husband, brother or dad have to get up frequently during the night? Does he have problems emptying his bladder" etc etc etc - I think it is a brilliant way to get under women's skin so that they get on to their menfolk.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 16 February 2016 19:26:43(UTC)

Originally Posted by: Online Community Member

Why is it anything to do with equality????? You have misunderstood I think - the poster says something like "does your husband, brother or dad have to get up frequently during the night? Does he have problems emptying his bladder" etc etc etc - I think it is a brilliant way to get under women's skin so that they get on to their menfolk.

Oh the Eye Ronny.  

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 16 February 2016 19:46:42(UTC)
Pickled Walnut or I am just going to you call Pickled for short, ( love the tash by the way)
I have only just seen your comment back to me, I tend to skip through things these days (it's my age)

So I will forgive you for calling me Trevor , I did think the avatar would give it away but you young ones just don't concentrate and pay attention. Yes the avatar is me and not Trevor (Trevor's better half) ( he doesn't post because he is black and there isn't a black 60 plus male section ) YET but I am working on it.

The avatar by the way is a little bit misleading this was me in my younger day sadly I am know 4 stone heavier and sport a beard ( but this is what age does) so yes I get that when family gather some of the younger generation want to spend time on there own and have more private conversations, BUT they are the teenagers IE not yet men. They don't tend to do a lot of chatting just texting .

40 Is actually middle aged ( not young) and by this age I would expect people to be rounded and able to converse with people regardless of age.
BFN
Julie X ( check the name )
NEVER LAUGH AT A LIVE DRAGON
Thanked 1 time
User
Posted 16 February 2016 20:27:49(UTC)

Julie - apologies for using your user name, I thought it might make it easier to spot replies. Your avatar is lovely by the way and thank you for your comments re the tash - I'm still cultivating it from last Movember and it's a good conversation opener for conversations with people of all ages.
Steve x

User
Posted 16 February 2016 23:34:29(UTC)

Dave,

What you said about the shortening of the penis following surgical removal of the Prostate is true though this will vary from man to man. But men who have had HT/RT can also suffer a reduction in length and girth as I can personally testify, a side effect that is less well known.

Barry
User
Posted 17 February 2016 07:04:39(UTC)

Hi Barry,

I was not aware of that. Does that mean if you have RRP, you might lose an inch and if you have follow up RT or HT you might lose another inch, or 2, 1 for each treatment?

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted 17 February 2016 08:49:37(UTC)

Not necessarily but while on HT it might retreat a lot (if the man loses his libido, for example) and without regular use via a vacuum pump or other exercise, the atrophy can be permanent. Orchiectomy has the same effect.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 17 February 2016 09:01:11(UTC)

I'm pretty sure that Brachytherapy has the same effect, at least to some degree.

Not that I would discuss that with John but I notice it

We can't control the winds - but we can adjust our sails
User
Posted 17 February 2016 13:11:23(UTC)
The question of atrophy was mentioned when I saw my GP re penile health.

If you look at my post re "ed- penile rehabilitation " you'll see that it's important to " exercise the muscle ".

Good luck everyone......
User
Posted 17 February 2016 18:04:05(UTC)

Well I'll go to the foot of the stairs! Not only have I got a short willy from HT/RT I have also got Peyronnes disease which gives me a bent one and shrinkage of the appendage with that also . Not sure where this is going to end up but at the moment it works around corners!!

Does this mean that when I finish HT that this situation reverses and a full service will be resumed ? I do not have a problem with excercising it (don'think my wife will either) my problem at the moment though is getting interested in the first place to do anything at all.

Lyn, mine has Deffinitely retreated a lot LOL still never mind it is a small price to pay for ridding myself of this bl****y cancer!

Keep taking the pills. Cheers Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 17 February 2016 18:32:12(UTC)
Again Chris/ Woody !

Same hymn sheet ....

Roll on end of HT - but I'm seeing ED clinic next month but it might be too late, not much left to rescue....

John
User
Posted 17 February 2016 19:20:21(UTC)

Are you stalking me John? Are you reading my personal emails?

Keep me posted if there is anything that will help you(and me) . Just a question ... How many times have you been married?

Cheers Chris /Woody

Life seems different upside down, take another viewpoint

User
Posted 17 February 2016 19:50:40(UTC)

Chris/Woody ,

Now I can't give too much info out. After all this is meant to be a site of anonymity !
Ok , so I've bared all re my emotions and you'll know that I have the odd ED prob or two being on HT.

But wanting to know if I've been married before ?

Should I confess to only the once and for 29 years as well ?
Will you reveal your score ?

But thanks for the offer re help. All I ask is for your 0.01 Psa score -
Not that I'm envious or anything !!!!

And there's the PM service too....

User
Posted 17 February 2016 20:40:13(UTC)

Well we are on similar paths so have PM'd you just to set the record straight.

Carry on baring all John it' a lot easier now with all the female hormones floating around our bodies and when you get fed up with it you can let the tears flow just because...then fall asleep with tiredness... Then get up for a wee, again then again and again. By the way last night it was back to normal with getting up five times, so the once only was a freak occurance.

Hang loose, cheers Chris/Woody

Life seems different upside down, take another viewpoint

User
Posted 22 February 2016 17:28:10(UTC)

Congratulations William, great news having a nice low PSA score, I know how you feel as I was told three weeks ago that mine is down to the same as yours following an initial PSA of 63 back in Feb last year.

Being so young with a young family was a bit of a worry for you I am sure and agree with you that earlier testing and poss every two years would be good for us menfolk. Problem will be getting most men to go for a test in the first place but I suppose that if there was a routine educating from an early age aimed at lads in school with the idea of teaching males to talk about and look after their health so that as they get older they will get themselves checked out regularly.

Best wishes to you and long may you stay undetectable.

Regards Chris/Woody

Life seems different upside down, take another viewpoint

Thanked 1 time
User
Posted 22 February 2016 21:37:24(UTC)

You are very fortunate William but I can assure you it isn't a scare story, it is a scientific fact. Some men are left so shortened that they are no longer able to wee standing up. Generally, you can expect to lose the length of the prostate gland although it depends a bit on how quickly you are able to regain erections (naturally or otherwise) and certainly the pump helps to draw it back down. It isn't simply about the urethra being shortened; it is also down to atrophy which reduces the length as well as the girth in most cases.

As I said, you are very fortunate but that doesn't mean you should doubt others who have not been so lucky. Interestingly, John is not aware that he has this problem because I have never mentioned it to him - I guess he can't remember that it was ever different or is unaware that it just doesn't hit my spot anymore.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted 22 February 2016 22:32:16(UTC)

God Lyn that's harsh !?
I used the pump from week 7 and have basically used it up until now which is 8 months. If anything , with the pump and the rings , I am as long as I ever was but with greater girth ( maybe all those penis growth adverts WERE true ). So despite an inch or so being cut out , I think regular use of the pump from approx 8 weeks really helps. I'm an engineer and totally get the mechanics , but I've been lucky maybe. But nothing natural -- so not so lucky :-((




If life gives you lemons , then make lemonade
User
Posted 22 February 2016 22:53:13(UTC)
Not doubting your measurements for one moment Chris , I am just a mere woman and can't tell my metres from my inches🤔 But I think I will go with Lyns description on sitting down to pee. (Loved that Lyn) . Why OH Why do men have to stand up I have never understood it. I suppose that is what the term splash back is for.🤐
BFN
JulieX
NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 February 2016 23:26:25(UTC)

Just to make clear that the lost inch is more about flaccid length than erect. Julie, our Mr P told us that almost all of his patients claim to be the same size erect as they were before but the wives said different when they were given a questionnaire to fill in :-(

A lot of men on HT find their penis withdraws and I know that there are 2 or 3 men on here who have been left with such little willies they would go into the cubicle rather than stand at a urinal.

CJ, is it harsh? I have described on my detailed thread that some of our favourite positions are simply impossible now because it isn't long enough. I am not going to tell him if he hasn't worked it out - it would be devastating.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted 23 February 2016 09:45:55(UTC)

I don't speak up either, what would be the point.
John didn't even have the op but I am sure Brachytherapy has a similar effect even if not as drastic.

We can't control the winds - but we can adjust our sails
User
Posted 24 February 2016 08:32:34(UTC)

all I can say is what ever works be glad, as I cant even raise a smile

regards
nidge

run long and prosper

'pooh how do you spell love'
'piglet you dont spell love -you just feel it'
User
Posted 24 February 2016 09:11:02(UTC)
I don't know what happens after a prostate removal but five years of HT has had such an effect it's just as well it removes the desire.

Devonmaid
 
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